A long ago school mate of mine had an older sister called Edith. I wondered why Edith didn't go to our school; I wondered about other things, too. Worrying things. What was the matter with Edith?
'Edith doesn't really look like us,' I eventually told my mother, who knew the family. 'No, she doesn't,' agreed mum, 'and that's because she was born different from most people. But there's no need to worry; I know she's quite happy, and that her family loves her. Babies bring their love with them, and that's a fact.'
I eventually learned that Edith had Down syndrome, although that was not the term used back then. I also learned that this syndrome is the result of an extra chromosome: Down syndrome individuals have two of chromosome 21. One out of every 700–900 babies born world-wide will have the syndrome, and there are currently approximately 13,000 Down people in Australia.
Because of advances in medicine, life expectancy for people with Down syndrome has been increased to about 60. I never learned what happened to Edith, but Down people at that time had a life expectancy of only about 40 years, if that.
My mum had a point: such children as I have observed in the long years since I knew Edith have been happy and loved. One I know is now a mature woman who leads a full life, despite the indifferent health that is often part of the condition. She learned to play a mean set of drums, could beat her brothers at billiards, had a job in a supermarket, and became a guide at the Sydney Paralympics.
I was reminded of Alexandra recently, when during a short flight I sat next to Emma, who clearly had the syndrome. It was impossible to tell how old she was: I thought she might be 19 or 20. She was accompanied by an efficient, attractive woman in her 40s, whom I took to be her mother, such was the care she bestowed on Emma.
This woman provided a packet of chips when takeoff was delayed, held Emma's hand during takeoff and landing — experiences that she clearly found frightening — and organised a colouring book and crayons so that she was happily distracted and organised for the duration of the flight. The deep affection between the two was obvious.
It turned out the woman was Emma's carer. 'I've looked after her for seven years. She's excited